The Clotting Connection A Newsletter for Families with Bleeding and Clotting Disorders

April 2016

Volume 6, Issue 4

INSIDE THIS ISSUE

Education Dayz!

HTC Spotlight: Chris Mashburn

Award given to Judy Primeaux and Brenda Riske

Registration for Mile High Camp

Outreach Clinics

Events

News

Affiliated with Children’s Hospital Colorado

and University of Colorado Hospital

Find us on Facebook, Twitter,

and our website for frequent

updates on news and events.

Go to facebook.com/

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Website: Go to

medschool.ucdenver.edu/htc

Email:

HTC.Newsletter@ucdenver.edu

Copyright © 2016 Hemophilia and Thrombosis Center at the University of Colorado Anschutz Medical Campus. All rights reserved.

Education Dayz: Learning & Connecting

On April 8th the Colorado Chapter of the National Hemophilia Foundation kicked off the annual Education Dayz at the Sheraton Denver Tech Center hotel with a dinner where they honored members of the bleeding disorder community who have made particular contributions over the past year. Both Judy Primeaux and Brenda Riske of our HTC were honored with the Dr. William Hathaway Visionary of the Year Award. NHF Colorado works closely with our HTC to bring learning opportunities, support, and a chance for families in our area to meet others with similar challenges. Education Dayz is one of these wonderful opportunities and our HTC is proud to sponsor and provide support to this event every year.

Dr. Tyler Buckner, one of our doctors here at the HTC, was able to teach a session about pain management and was thrilled to meet with many of the families who were in attendance. Dr. Mike Wang, also from our center, was able to attend and spoke on new medications that have recently been approved or are being developed. Their question-and-answer panel on these medications was a wonderful opportunity for patients to discuss their needs and concerns.

Amber Casey and Chris Mashburn, both nurses from the HTC, hosted an Infusion Session as one option for those in attendance. They were pleased to have a great

turnout for their session, with close to 10 children and their parents joining them to learn about infusions.

Several additional families joined to watch, listen and learn while the others gained hands on experience. Many of the families, who already have experience with infusing, were open and honest with newer families, providing insight and tips for successful home infusion of factor products.

One family whose baby had recently received an implanted port was generous enough to demonstrate their technique for accessing the port and infusing factor. They did a wonderful job and their

Continued on page 3

George Weilert and his parents participating in a session on infusions at Education Dayz. Photo: Chris Mashburn.

Patients and families participating in a class on advocacy at Education Dayz. Photo: NHF Colorado

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Mile High Summer Camp will be here before you know it!

This year camp will be on July 10-15, 2016 at Rocky Mountain

Village at Easter Seals in Empire, Colorado. The Leadership Camp

begins two days earlier on July 8th and is for those ages 14-18.

This year children ages 12-13 can also sign up as part of the BOEC

Wilderness program as an option. Campers must be 12 by the first

day of camp to participate in the BOEC Program.

There is also a CIT (Counselor in Training) program for those

‘graduated’ campers who would like to be involved.

For more information and to find registration forms, please go to cohemo.org and find their camp

pages and links to the forms.

All registration fees and forms are due by June 1, 2016. NO EXCEPTIONS.

REGISTER FOR MILE HIGH SUMMER CAMP

If you have been at our clinic in

the past several months, you

may have met Chris Mashburn,

our new Clinical Manager here

at the HTC. While Chris is

responsible for managing our

nursing staff, she also regularly

works with patients when they

come into our clinic. She has

worked for many years for

Children’s Hospital and has vast

experience with pediatric care,

including pediatric cardiology

and pediatric heart transplants.

She is thrilled to be learning a new sub-specialty in

hemophilia and blood disorders as she works with

patients at our center.

Chris is a registered nurse and holds a Bachelor of Science

degree in nursing from the University of Colorado School

of Nursing. She is native to Colorado and has lived most of

her life here, enjoying a close family, including two

children and three grandsons. Though she only started at

our clinic in January, she already has been active in

working with our staff to help with team development,

program development, and with representing the nursing

staff at HTC and hospital-wide committees.

One of the things that Chris has enjoyed about working

here at our HTC is the focus on teamwork and the

comfortable rapport between physicians and nurses. She

has always been involved in research and loves seeing

research integrated into the day to day activities of the

nursing team. “It is exciting to be a part of this team who

is such an active part of improving the future for patients

with hemophilia and blood disorders.”

One of Chris’ current efforts is the ATHN QI project,

which is focused on putting into place a sustainable

process for evaluating and improving on the care provided

to our patients. Chris loves the interactions she is able to

have with patients and families and she relishes the

opportunity to teach and empower families to manage

their health issues in a positive manner. “Patients we see

are so inspiring; they teach me real life lessons every day

and for that I am grateful!”

Like many in Colorado, Chris loves the outdoors and

doing anything outside. Snowshoeing, biking and walking

are among her favorite activities. She also enjoys

photography and quilting. She loves to visit the beach and

her favorite place to vacation is Hawaii.

Chris looks forward to getting to know more families and

helping the HTC continually improve. She welcomes

feedback from patients and families, and hopes they will

get to know her and feel comfortable sharing with her

both things we are doing right and areas where we can get

better. We at the HTC are thrilled to have Chris and her

bright personality and experience with us in our clinic and

hope our patients benefit from her care.

HTC SPOTLIGHT: CHRIS MASHBURN, RN, BSN

Chris Mashburn, RN, BSN HTC Clinical Manager

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MONTH (FROM PAGE 1)

demonstration was both helpful and reassuring to other

families with similar needs. The willingness to share

experiences with each other is what makes the bleeding

disorder community so special.

Our nurses enjoyed working one-on-one with these

families, answering their questions as they navigate the

often scary and confusing world of home infusion. Our

other staff members who were able to attend reported that

the best part of being a part of Education Dayz is the

chance to visit personally with families in a non-clinic

environment.

Sharon Funk, one of our Physical Therapists, spoke with

many families and appreciated their honest feedback.

Having the opportunity to visit with everyone from clinic

staff, other families and various pharma or medical

representatives can help families stay informed and

support one another. Quite a few newer families were in

attendance and our staff was thrilled to get to know some of

them better or meet them for the first time.

We encourage these families and those who were unable to

attend this year, to attend Education Dayz in the future to

continue to build support for one another in the bleeding

disorders community. It is a wonderful chance for all of our

HTC staff to connect

with families and we

hope all who were

able to attend this

year learned and

benefited from the

efforts of NHF

Colorado and all who

participated.

UPCOMING OUTREACH CLINICS The HTC staff regularly visits areas in our region to allow patients to schedule their annual comprehensive visits at a closer location to their homes. Our staff recently developed a test clinic for those patients living near Colorado Springs, and it was a success!

Plans are in the works to have additional clinics in Colorado Springs to bring easier access for those in that part of the state. Please watch our Newsletter, Website, and Social Media outlets for updates and upcoming clinic dates for Colorado Springs.

Details about our Outreach Clinics can be found at our website at www.medschool.ucdenver.edu/htc and clicking on the CLINIC tab at the top of the page. Then go to the OUTREACH CLINICS tab.

Our center was

thrilled to see two

of our HTC staff

honored as

recipients of the

Dr. William

Hathaway

Visionary of the

Year Award at the

annual Education

Dayz held on April

8-10, 2016.

Judy Primeaux, who has managed our pharmacy and

much of our finances for over 20 years, has recently

retired and was honored for her dedication, support,

and involvement. She has worked tirelessly to manage

our pharmacy and make specialized medications

available for our bleeding disorder community under

the federal 340B program.

Brenda Riske, who has worked at the HTC since 1984

and is currently our Regional Coordinator until her

retirement later this year, was also honored for her

tremendous efforts to bring our HTC from a small

clinic to being the leader in supporting those with

bleeding disorders in the entire Rocky Mountain

region. Brenda was out of town during the award

banquet, meeting with other international leaders in

hemophilia.

Both of these remarkable women have been

instrumental in the success of our HTC and are well

deserving of this achievement.

HTC STAFF HONORED AT EDUCATION DAYZ

Outreach Clinic Grand Junction, CO in 2015

Photo: Marilyn Manco-Johnson

Judy Primeaux receiving her award with

Victoria Hartman & Amy Board.

Photo: NHF Colorado

Malia Jackson receiving the Future Leader

of the Year Award. Photo: NHF Colorado

Upcoming Clinics: June 6-8, 2016: Billings, Montana Aug 1-2, 2016: Missoula, Montana Sept 21-23: Grand Junction, Colorado

PLEASE PLACE STAMP HERE

Hemophilia &

Thrombosis Center 13199 E. Montview Blvd., Suite 100

Aurora, CO 80045

Clinic Main: 303-724-0724

or toll free at 888-297-0724

Pharmacy Main: 303-724-0168

or toll free at 888-724-7427

Web page:

http://medschool.ucdenver.edu/htc

These are a few of the headlines that we’ve recently featured on our home page. We maintain a Newsroom page at our website with a list of the news we feel may be of interest to our patients and families. To see more head to: www.medschool.ucdenver.edu/htc then find the RESOURCES tab, and go to the NEWSROOM page.

Biogen Lights Up Major Structures, Raises Funds, and Donates Medications in Honor of World Hemophilia Day CSL Behring Marks World Hemophilia Day by Donating Medications for Bleeding Disorders to Developing Countries Youth is Served in Stroke Save Research on Mice Shows Concurrent Influenza Vaccination Reduces Inhibitors Study of Hemophilia Care Reveals Progress, Ongoing Health Needs

RECENT HEADLINES UPCOMING EVENTS May 27-29: NHF CO Family Camp–Allenspark, CO

May 30: Clinic and Admin closed for Memorial Day

June 6-8: Outreach Clinic–Billings, MT

June 26: Strike Out Stroke with the Colorado Rockies at Coors Field

July 4: Clinic and Admin closed for Independence Day

Jul 8-10: Mile High Camp Leadership Pre-Retreat-Rocky Mountain Village

Jul 10-15: Mile High Summer Camp-Rocky Mountain Village

July 21-23: NHF Annual Meeting-Orlando, FL

July 24-28: WFH World Congress- Orlando, FL

Aug 1-2: Outreach Clinic-Missoula, MT

See more at our Events Page on our website: www.medschool.ucdenver.edu/htc find RESOURCES tab, go to EVENTS